Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.

ABSTRACT: A medical information commons (MIC) is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

SUBMITTER: Deverka PA 

PROVIDER: S-EPMC6730638 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature